NICU

[ColsieCoCo]

Hi mums and dads,
I’m soon going to be a qualified nurse working in a NICU I’m super excited but I’m also scared as I do not have my own children. I would love to hear what experiences you have had with a NICU stay, what staff have done to support you and what could be improved so I can provide the best care for the babies in hospital and their families.

Explain as much as you can exactly what your doing and what each machine / charts / numbers / beeps mean. The worst part for me was not always knowing what the nurses were doing or checking for.
Also remind parents to look after themselves, making sure they have eaten and have drinks etc. I felt bad leaving the bedside so wouldn’t often miss meals which meant I wasn’t at my best for caring for her when we moved to a normal ward.

And congrats btw! All nurses but especially NICU nurses are angels in disguise!

We spent 4 months in nicu with dd1. Apart from one or two, the nurses were amazing. A couple of things stood out:

• listening and being there for the parents is almost as important as caring for the babies
• helping parents do the nappies, first bath, asking them to choose first clothes, empowering them to do tube feeds etc.
• we were given stuff to make a name sign (crayons etc)
• reminding parents to look after themselves, taking breaks from the nurseries and helping mums with expressing if needed.

Our story didn’t end well but I will be forever grateful to the heroes of the NHS. In fact I have already started organising a Christmas collection of chocolate, nice tea and coffee etc for the nicu staff. Hoping to get enough for everyone on the ward.

I agree with the above, I often felt like I was a spare part in the room that people ignored, occasionally someone would look over and explain what was happening but rarely. Our nurses were swapped over a lot so we didn’t get to build much of a relationship with any of them so seeing a cheery face and a quick catch up makes you feel so much better when you arrive.

Thank you so much for this reply I’ll definitely parents to take care of themselves to be able to take care of their babies

Thank you so much for your positive advice for NICU staff. I’m so sorry that your story did not end as you hoped if there is anything that can be done to support you and your family please let me know

Thank you so much for your reply. As a new staff member I often also feel like a spare part aswell and feel like family members are being repeatedly told the same information so me repeating it won’t help. But as free reading the replies I believe it is best to to update families (even if they have already had an update)

We spent three months in NICE/SCBU and all the staff were amazing. The nurses updates were always valuable even though they may seem unremarkable to someone else. When you haven’t been able to stay the night or not spent long with your baby that day (we have older children so weren’t always able to spend as long as we would have liked) all updates are meaningful even if it’s just how he slept well etc.

I often couldn’t stay with him for difficult procedures as it was just too much to watch him in pain. It meant so much that a nurse who I knew cared for him was there to hold his hand on the days I couldn’t.

The only thing I’d change is that I wish that the staff wouldn’t have called me “mum”. Every time I heard them call me that it made me wince!

Thank you for your feedback. It’s lovely to hear that you had a good experience with receiving updates.

Is there any particular way you think would be the best for staff to ask how to address you?

Chat to the parents. About random stuff as well as the babies. It made me feel normal to hear about the nurses own lives as you would. I was in daily for 8 weeks and am grateful to everyone of those lovely nurses and doctors.

Take the time to show them how to hold their tiny baby if that's appropriate. I was so scared to touch her in the beginning weeks. I'm fact, I don't think I even touched her for nearly a week.

Good luck in you career

Mine did not spend ages there luckily.
But I just found they were quite unhelpful about feeding. They always seemed to be able to get her to take much more than me but it later transpired I don't think her having problems with feeding was unusual as she was premature.
But they were just like oh you do this and get on with it and left me. I just felt they could have been more empathetic or helpful or even taken the time to explain it's normal when they're premature (I felt like they couldn't see the issue). But after months I realised myself that her problems feeding was from her being premature. But no one explained this was normal at the hospital.
When I say problems feeding I just mean it would take her absolutely ages to take a small amount.

Agree with PP, I found advice on feeding very unhelpful. My baby was only in there for a week but really struggled when we came home because of the lack of help I got. My baby wasn’t overly premature (36 weeks) but had a very low birth weight so feeding was a struggle, would take ages to take a small amount.

I also got conflicting advice on which bottles to buy (breastfeeding didn’t work out). One nurse told me
to buy Tommee Tippee so I bought loads then bought one in the next day to try my baby on and she wouldn’t take it (massive teat for a tiny baby) until another nurse said Tommee Tippee are the worst bottles for small/prem babies and that I should buy Nuk! I spent a fortune on bottles.

Is there any particular way you think would be the best for staff to ask how to address you?

Most of the time people don’t need to use a name when they are speaking to you directly so if they don’t know it, can just avoid it. If they need to call you something, then Baby X’s mum is fine, eg “Baby X’s mum was asking if someone could help her with feeding later”. But just “Mum” made me want to scream “I’m not your mum!” every time.

But to be honest, after three months I was surprised that no one knew my name. We knew all the regular nurses names and the other long stay parents. Maybe the little card with the baby name on each cot, could have parents names too to make it easier.

I was just coming on here to say learn names for both parents (or at least write them on the front of their notes so you can look it up each time) and don't call them Mum or Dad. Initially I found it odd and rude, by the end it felt almost dehumanising. If you really don't know their names then 'Bob's mummy' would do but never just Mum.

I totally agree about being as much of a support for parent's as babies. Many mums especially will have been through something immensely traumatic before their child arrives with you, let alone the trauma of then having a baby in NICU. The nurses for my baby were generally amazing and many have become friends, but I look back and wonder how not one person checked in with me about how I was doing after my hugely traumatic birth experience. I would say that lack of acknowledgement and the 100% shift of focus onto my baby certainly exacerbated my ptsd later on - I felt like I didn't exist in the world for quite a while.

Last thing - we were so grateful to the staff that celebrated our baby. One consultant greeted every new patient and their parents with a "congratulations!". That same consultant used to tell me about my child's personality as much as their health needs - staff noticing things like 'she's really found her voice today!' or 'I can tell she loves it when you stroke her feet' really made me feel like they saw and celebrated my child for who she is. They also helped us do things like hand and foot printing, and measuring her against objects like pint glasses and chocolate bars which also added to a sense of small celebration for such a fragile life.

In all the weeks I spent in NICU, those are my only grumbles though - we had an immensely positive experience overall and the nurses felt like family by the time we left. I think NICU staff have to have a certain something about them that makes them angels on earth.

My request would be to respect the parents' wishes. We requested no bottle feeding as I wanted to breastfeed. We came in one morning to find our baby had been bottlefed overnight. I never did establish breastfeeding. She had an ng tube so it was completely unnecessary.

Another example- my baby needed a kidney scan. I was supposed to go with her and the nurses knew I wanted to. Some time before the scan was supposed to happen I left the ward briefly to get some food. When I came back the incubator was empty. I thought the worst but they had just taken her early without me, so I couldn't be there to comfort her.

Plus following hygiene practices when passing between patients. My baby got two hospital acquired infections during her nicu stay. And not gaslight the parents - we were told that the baby in the adjacent incubator being diagnosed with the same infection on the same day was just pure coincidence. 🙄

There were other examples. I couldn't wait to get my baby out of there.

@eurochick that sounds bad ☹️
I'd be so mad and upset if my baby had been given a bottle when I'd said not to and if I couldn't be there at the scan!

I had a very difficult birth with dd and struggled with mobility and nicu were so understanding that I couldn't be there as much as I wanted to because staff had to wheel me down there from my ward. Just understanding that one fact made things so much easier because I felt like I would be judged I didn't spend 24 hours a day with my baby.

The way nicu were with my dd was just amazing, they really listened to my concerns, they were quick to help me with anything . My milk hadn't come through and they walked me through how to make a bottle, gave me loads of teats for the tiny bottles they have to take home with me and loads of support trying to breastfeed.

I was sitting with my daughter while a new nurse was shadowing a senior nurse. (The new nurse had been in adult nursing for a while but was new to NICU.)
I vividly remember the new nurse asking how to change a nappy.
I know we all need to start somewhere but that was a bit much for me to hear. So if you don’t have much experience of babies generally, perhaps ask to spend some time with any friends with little ones, etc?
Overall though, the nurses were wonderful and I am very grateful for the care she received.

Let parents know how what they can do to care for their babies. As a parent with a baby in NICU after having two full term births I often felt I was in the way of the nurses doing their jobs.

Mum of a 26 weeker.

• a lot of NICUs are now prioritising family centred care where parents do as much as possible. I always preferred that. If you can facilitate that for parents the better.
• I was often quite traumatised in the NICU (I am a highly educated and sensible person otherwise, my DH is a physician)- and would just not be able to process information. Or get panicked about minor things. DH would do the same. The day they decided to trial my baby on air DH was 100% certain something bad would happen. Nothing did. But not even being a doctor can cushion you from the irrational fear that grips you in the NICU. So you may have to repeat the same information many times and offer reassurance.
• I loved it too when they treated him as a baby not a statistic. And a baby with a personality. One day not far from discharge I walked in and found all the nurses around his bed. My heart was in my mouth. Turns out he was the only baby awake, they had all finished their jobs and they were taking 5 mins to play with him! It was very sweet. When I came in, they said, why don’t you go and grab a quick cup of tea and give us 5 more mins with him? I once walked in and found the nurse looking exhausted and she said: ‘your son is leading a rebellion today. Pulled out his NG tube and was waving it around like a flag. Within 15 mins three other babies had done the same. Go and tell him to save his activist tendencies for more worthwhile causes- I need to pee!’ Both of us laughed and laughed even though she was clearly going mad.
• I liked it when nurses were open to parents using their gut instinct. I remember I once told her he didn’t look well. Clinical obs all fine. I went home. An hour later she was changing his nappy and she thought: hmm normally he’s squawking away but he’s quiet and mum said her gut said he wasn’t well. She ordered another blood gas. Haemoglobin was a little low. She called the consultant. He needed a blood transfusion overnight. She took my word seriously and trusted her own gut instinct as well.